Amanda R :) from California - Dx 2009 - RIP March 2015

[Bonni Hess]

Hello again dear Amanda,
Since you have eleven CT scan visible mets (and unfortunately given the nature of this disease possibly more microscopic ones which are not currently visible on the scans), and Cryo can only remove a couple at a time, it may be a better option to have a thoracotomy to try to remove all of them. This certainly seems to have been a successful approach with CureSearch's daughter who has now had stable disease with no new tumors and no growth and even some shrinkage of her few remaining lung mets since her last thoracotomy in 2007. Cryo is much less invasive than a thoracotomy with a faster recovery time, but it is usually best used to treat individual unresectable/dangerously located lung mets smaller than three centimeters. Dr. Littrup always made it clear to us that Cryo was an intervention and not a cure, and that Brittany's other multiple lung mets would ultimately need to be addressed with resection (thoracotomy) or a systemic treatment to shrink/destroy them. While I think that a thoracotomy may be the best treatment approach for you if you cannot afford laser resection with Dr. Rolle in Germany, which I personally think would be the best approach since he is able to remove so many microscopic mets, I think that it should be done sooner than six months and hope that you can convince your oncologists to schedule it sooner. I also would encourage you to have the other scans ( pelvic and abdominal CT's, brain MRI, bone scan) if you haven't done so recently because our experience with Brittany was that when her lung mets started increasing in size, she also heartbreakingly developed mets in other parts of her body. Vigilant scanning is so very important in managing and fighting this disease so that any new mets can be found and treated at their smallest most treatable size.
I am so glad that you have such a wonderful oncologist in Dr. Forscher and that he is so responsive to your concerns, caring, supportive, and encouraging. Please take care dear Amanda, stay positive and strong as you always have been, and keep the Board updated as you are able.
With warm hugs, deepest caring, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello Bonnie an Olga
First, i cant pay to go to Germany its just to much money for me as a mother that is now now able to work like i did it would be impossible.
I have called my Onc and told him in three months scan and then surgery.. I am not waiting six months. I am lucky that there has been nothing new on almost
5 years and i do not want to push my luck

All my other scans are clear thankfully! I still have not had a brain MRI because of my claustrophobia

The largest met they said grew maybe 4 mm in the six month period and that side will be done first! It is not i think 13mm. Some are stable and a few may have gotten smaller. But, still the same amount! The smaller mets are 3, 4. 5 mm

After our talk i will go ahead with the Thor an then when an if some come back i will do the surgery Ivan gets.

I remember reading a patient right their bodies are the war fields that our oncs do battle! I add that after every battle there is always damage after a big fight! I am concerned about more damage on both sides after the next two surgeries :/ do you think i can handle these? the Onc says it wont be as bad as my others but what do you think?

Screw cancer!

[Ivan]

Hey Amanda, why don't you get them to sedate you for the MRI? They do that for kids.

[Amanda]

I asked them they said no ...

I dont have any pain or problems so far so i hope i am clear...

[Bonni Hess]

Dear Amanda,
I read on your post on Ivan's update topic that you will need to take time off from your exercise regimen for two surgeries. Are these surgeries the thoracotomies that you were considering having to resect your lung mets, and when are they scheduled to be done?
Thinking of you with deepest caring, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello Bonnie
Yes, i have two of them to remove the 13 things in my lungs. I am working out very hard to ger my core strong an then remove these an i am praying i am free for a few years or maybe for good from this evil cancer I am frightened though i wont be able to handle the two surgeries An a list of things...
How are you an the family? You have all been in my thoughts...

*hugs*

[Bonni Hess]

Hello again Amanda,
Thank you for your very prompt and thoughtful response. You didn't say when your two surgeries are scheduled, but please know that my most special thoughts and very best wishes will be with you for a very successful outcome to the surgeries, a speedy recovery, and sustained long term disease stability following the removal of your multiple lung mets. I am sure that you will "be able to handle the two surgeries" fine as you are a very strong, courageous, and physically fit woman who has already successfully endured and recovered from your previous major rib tumor resection. I will be holding you very close in my heart and thoughts and anxiously awaiting your post-surgery update when you are able. Take care dear friend.
With special hugs, deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni

[MarietjievdMerwe]

HI Amanda!!
Just want to say I will be thinking of you and the surgeries. I will also pray with you to recover well.

Thank you also for you very kind wishes for brother Tok.

It is just so sad that they won't give you sedation for the MRI! I recently had a MRI done. The dr gave me Dormicum and I slept like a baby through the terrible process.

Please keep us updated.

Kind regards.
Marietjie.

[MarietjievdMerwe]

Dear Amanda,

I know this is a very very serious disease, but I just want to let you know that I always have a smile on my face when reading your VERY encouraging posts to our ASPS friends.

You are truly fighting this monster with a smile on your face.

Kind regards.
Marietjie.(Tok from South-Africa)

[Amanda]

Dear Marietjie & Tok
that means a lot to me thank you so much xox!

When i read your posts i feel the same! Tok has been pushing thru this ASPS like a tank! An you gathering information an your posts to everyone are wonderful!

Thank you again! This made me smile big this morning <3

[Amanda]

Hello
I am trying to set up my first thorascamy in August two weeks before my son starts back to school...
Anyone have any input on if thats enough of a space or should it be three weeks? I will need to be up early and make lunches and stuff... I wont be lifting over ten pounds nor driving him.

The last one i had was a lot more then the lung an it took longer to heal from. I have never just had the lung done. Let me know what you would do please

[Ivan]

I'd say 2 weeks is cutting it close. It may work, but you definitely won't be back to normal yet. In my opinion, 3 weeks is a better idea.

[Amanda]

Hi Ivan,
Thank you! I will give three weeks

Glad to know at that point i will be a lot better .. last surgery i was no where near alright yet, lol

Hate surgeries but i better get used to it! I will be having them for life now! You know that dog in the cartoon Frankenweenie

I am Frankenweenie lol

http://www.youtube.com/watch?v=2cqI6hPra7c

[D.ap]

Amanda
My husband and I have a weenie dog
Thanks for the chuckle of the day
We will be thinking of you as the day draws closer for your surgery
Keep up the good humor.
Love
Debbie

[Amanda]

Thank you Debbie

They are great dogs! <3